Agatha M. Gallo

Assessment of the Psychometric Properties of the Family Management Measure

OBJECTIVE This paper reports development of the Family Management Measure (FaMM) of parental perceptions of family management of chronic conditions. METHOD By telephone interview, 579 parents of children age 3 to 19 with a chronic condition (349 partnered mothers, 165 partners, 65 single mothers) completed the FaMM and measures of child functional status and behavioral problems and family functioning. Analyses addressed reliability, factor structure, and construct validity. RESULTS Exploratory factor analysis yielded six scales: Childs Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, Parental Mutuality, and View of Condition Impact. Internal consistency reliability ranged from .72 to .91, and test-retest reliability from .71 to .94. Construct validity was supported by significant correlations in hypothesized directions between FaMM scales and established measures. CONCLUSION Results support FaMMs; reliability and validity, indicating it performs in a theoretically meaningful way and taps distinct aspects of family response to childhood chronic conditions.

Patterns of family management of childhood chronic conditions and their relationship to child and family functioning

Understanding patterns of family response to childhood chronic conditions provides a more comprehensive understanding of their influence on family and child functioning. In this paper, we report the results of a cluster analysis based on the six scales comprising the Family Management Measure (FaMM) and the resulting typology of family management. The sample of 575 parents (414 families) of children with diverse chronic conditions fell into four patterns of response (Family Focused, Somewhat Family Focused, Somewhat Condition Focused, Condition Focused) that differed in the extent family life was focused on usual family routines or the demands of condition management. Most (57%) families were in either the Family Focused or Somewhat Family Focused pattern. Patterns of family management were related significantly to family and child functioning, with families in the Family Focused and Somewhat Family Focused patterns demonstrating significantly better family and child functioning than families in the other two patterns.

Disclosure of Genetic Information Within Families

When someone has or is at risk for a hereditary condition, the entire family is affected. Communication within families about such risk is important—its central to independent decision making—but it can be difficult: whether someone can disclose such information, even to family members, depends on many factors. In order to help patients and families make decisions about disclosing information regarding genetic risk, and avoid undo distress in the process, nurses must understand the many issues that affect families when genetics is discussed.

The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: Initial findings from a grounded theory study

Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at-risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research.

Reproductive Decisions in People With Sickle Cell Disease or Sickle Cell Trait

In the context of an inherited condition such as sickle cell disease (SCD), it is critical to understand how people with SCD or carriers (sickle cell trait [SCT]) face the challenges of making informed reproductive health decisions. The purpose of this analysis was to examine the beliefs, attitudes, and personal feelings of people with sickle cell disease or sickle cell trait related to making informed reproductive health decisions. Three focus groups were conducted with a total of 15 people who had either SCD or SCT. Five themes were identified: health-related issues in sickle cell disease, testing for sickle cell trait, partner choice, sharing sickle cell status with partners, and reproductive options. These findings enhance understanding of the reproductive experiences in people with SCD and SCT and provide the groundwork for developing an educational intervention focused on making informed decisions about becoming a parent.

Parents’ Perceptions of Functioning in Families Having a Child with a Genetic Condition

In a study of families having a child with a genetic condition, patterns of family functioning were identified through cluster analysis of families with two spouses. Patterns were based on both parents’ assessments of family satisfaction and hardiness, as measured respectively by the Family APGAR and Family Hardiness Index. The validity and clinical significance of the clusters were supported by demonstrating that cluster membership distinguished between parental reports of their own quality of life and their child’s functional status, as measured by the Quality of Life Index and the Functional Status II, respectively. The clusters were non-categorical in the sense that they did not depend on the type of genetic condition. These findings point to the importance of addressing family functioning as part of genetic counseling.

Family adaptation in childhood chronic illness: a case report.

When a child is diagnosed with a chronic illness, families adapt by drawing on the perceptions of individual family members, on the familys existing resources, and on new resources. This method of family adaptation has been described by McCubbin and Patterson in their Family Adaptation Model. The Family Adaptation Model is illustrated through a case study of a familys experience with type I diabetes. The model and case study yield a list of nursing assessments and interventions for families with a chronically ill child.

Applications of Performance Ethnography in Nursing

In this article, the authors explore the origins of and theory behind performance ethnography and demonstrate how it can be used effectively in nursing research, education, and practice. They have included a performance text created by one of the authors based on semistructured, qualitative interviews with parents of children with genetic conditions. The text highlights the lived experiences of the parents, allowing the “audience” to appreciate more fully the complexities of parenting children with genetic conditions. The authors also discuss specific ways in which nurses can use performance ethnography in their professional practice, including several examples. Performance ethnography can be a creative method for nurses to communicate with patients and families, research audiences, colleagues, and students. Clinicians, researchers, educators, and students can learn to use performance ethnography to achieve the goal of a clear understanding of human needs and conditions for improved quality of care.

Ecological Influences of Early Childhood Obesity A Multilevel Analysis

This study aims to determine the contributing factors for early childhood overweight/obesity within the contexts of the child’s home, school, and community, and to determine how much each of the ecological contexts contributes to childhood overweight/obesity. The framework was developed from Bronfenbrenner’s ecological systems theory. Data for 2,100 children from the Early Childhood Longitudinal Study, Birth Cohort, were used in a series of multilevel modeling analyses. There was significant variation in childhood overweight/obesity by school and community. The majority of variation in childhood overweight/obesity was explained by the child and family factors in addition to school and community factors. Explained variance of childhood overweight/obesity at the school level was 27% and at the community level, 2%. The variance composition at children’s family level alone was 71%. Therefore, overweight/obesity prevention efforts should focus primarily on child, family, and school factors and then community factors, to be more effective.

Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.

Background:People with sickle cell disease (SCD) or sickle cell trait (SCT) may not have information about genetic inheritance needed for making informed reproductive health decisions. CHOICES is a Web-based, multimedia educational intervention that provides information about reproductive options and consequences to help those with SCD or SCT identify and implement an informed parenting plan. Efficacy of CHOICES compared with usual care must be evaluated. Objective:The purpose was to compare immediate posttest effects of CHOICES versus an attention-control usual care intervention (e-Book) on SCD-/SCT-related reproductive health knowledge, intention, and behavior. Methods:In a randomized controlled study, we recruited subjects with SCD/SCT from clinics, community settings, and online networks with data collected at sites convenient to the 234 subjects with SCD (n = 136) or SCT (n = 98). Their ages ranged from 18 to 35 years; 65% were women, and 94% were African American. Subjects completed a measure of sickle cell reproductive knowledge, intention, and behavior before and immediately after the intervention. Results:Compared with the e-Book group, the CHOICES group had significantly higher average knowledge scores and probability of reporting a parenting plan to avoid SCD or SCD and SCT when pretest scores were controlled. Effects on intention and planned behavior were not significant. The CHOICES group showed significant change in their intention and planned behavior, whereas the e-Book group did not show significant change in their intention, but their planned behavior differed significantly. Discussion:Initial efficacy findings are encouraging but warrant planned booster sessions and outcome follow-ups to determine sustained intervention efficacy on reproductive health knowledge, intention, and actual behavior of persons with SCD/SCT.